Debbie Purdy, in constant pain from MS, says last week’s proposals that GPs
could help the terminally ill to die don’t go far enough

We’re in the middle of a conversation when Debbie Purdy suddenly goes rigid. “Woah,” says her husband Omar, pulling her feet on to his lap and holding them tight. “It’s a bad one.”

Her face contorts and her back arches in her electric wheelchair. Then a few seconds later, it is over. “There,” she says wearily. “Where were we?”

Talking about the right to die, actually, in the wake of last week’s report by the Commission on Assisted Dying. But that’s not as grim as it sounds when you’re in the company of Debbie Purdy and Omar Puente.

Yes, she has multiple sclerosis and is in constant pain. Yes, she spends most of her days on the phone or computer at her specially adapted terraced house in Bradford campaigning for the medical profession to be allowed to help people like her kill themselves. But this feisty 49-year-old is full of wit and energy and – it must be said – life.

“I want to live for as long as I am able, actually,” she says, looking over at Omar, who is now massaging her feet. Their love story is a remarkable one, and it is visibly still unfolding. “Life is not a b----. I have so much to be grateful for. But I am in a lot of pain, there is a lot of suffering, and when the moment comes that I can no longer cope with all that, I want to be able to choose to end my life, knowing that the man I love will not go to prison for being there and helping me.”

That is why she started a legal action that led to an historic ruling in the House of Lords two years ago. She wanted to know what would happen to Omar – a musician from Cuba, who can make your heart leap when he plays the violin – if he came with her to the Dignitas clinic in Switzerland, to hold her hand while she took a lethal dose of barbiturates.

Their Lordships agreed that the law was not clear. “I was gobsmacked when we won,” she says, “but I think the Law Lords understood they were not giving me permission to die. They were giving me permission to live.”

The Director of Public Prosecution issued new guidelines which suggested it would not be in the public interest for someone like Omar to be arrested, if they were obviously acting out of compassion.

Since then, 31 people from Britain have travelled to Dignitas to die, and none of their companions have been prosecuted, according to the Commission on Assisted Dying. This panel of peers and medical professionals was set up in the wake of Purdy’s victory, which had opened up the debate on suicide in a new way.

After a year of deliberation the Commission said on Thursday that the law was “inadequate and incoherent”. It called for doctors to be allowed to give lethal drugs to patients who have less than a year to live, who have the mental capacity to know what they’re doing, and who can take the final dose themselves.

“I don’t believe it goes far enough,” says Purdy, who would not be helped by the proposed scheme because of the nature of her illness. “But what it does say is a no-brainer. Most people in Britain would agree. If politicians can’t bring it into play by the summer then they are failing to protect people in this country. And I hope they will then go further and have a debate about a law that can protect the vulnerable at the same time as helping people like me.”

They won’t, of course. No political leader will risk backing the proposals. The Commission has been accused of bias, since it was funded by the author Sir Terry Pratchett, who has early-onset Alzheimer’s and is strongly in favour of assisted suicide. But Purdy is a relentless optimist, who believes attitudes to assisted dying are changing. “I never thought we would win in the House of Lords. You don’t think it will happen until it happens.”

She does believe that the Commission’s proposals would lead to fewer people committing suicide early out of fear about what is going to happen to them. “If we had lost the case I would be dead by now. I didn’t know how quickly my condition would worsen, and I was too frightened to leave it much longer. I was scared I would become unable to communicate. I was scared that because my husband is black, with a name like Omar, he would be at risk of arrest. It was more frightening to me to endanger him than to die early. So I was preparing to go early, on my own, while I could.”

She didn’t have to – and says that gave her a new lease of life. “The pain didn’t go away, it has got worse. My mobility hasn’t improved, it’s got worse. But my enjoyment of life has got better. I can enjoy each minute without thinking, 'How will this affect my ability to get to Switzerland? Do I have to go now?’ It allows you to think positively.”

Is she honestly suggesting that knowing you will be helped to die helps people stay alive for longer? “It gives people a better chance of a longer life. Having the means to kill yourself means you can face the day. Your focus changes, away from your own suffering. If you know you can decide to end it, that gives you the strength to say, 'OK, I’m not going to make that decision now, but I might in 10 minutes’ time. Or an hour. Or not.’ You are in control. You can relax.”

Purdy wrote a book about her life after the ruling called It’s Not Because I Want To Die (Harper True), but a more extraordinary thing to do was go indoor skydiving in Manchester. “You go in a tube that is a windtunnel and you are suspended in the air. It’s brilliant.”

Omar interrupts in his deep, smoky voice: “I’m not doing that again. Next time I’ll stay outside with a camera, a cigar and a mojito. For me, though, it was great to see Debbie free. No wheelchair. Just her, flying. That was magic.”

She was a thrill-seeker and a globe-trotter when they met, working as a music journalist and trying whatever came her way, from parachuting to white-water rafting. One night in Singapore Debbie, then 31, saw a band called The Cuban Boys, whose leader was an “incredibly charismatic man with a little Mafioso-style moustache”. She couldn’t keep her eyes off him. He saw a young woman in a little black dress, and the effect was the same.

They got together despite having no common language at first, and when a neurologist in England told Debbie two months later that she had multiple sclerosis, it was Omar she rang. She flew back to Singapore. He had no idea which flight she would be on, but went to the airport early in the morning and met every one that day until he found her.

“I’m not sure we would have stayed together if I hadn’t had MS,” she says, but a crucial moment in their relationship came when they asked the British embassy for a visa, so that he could come here with her to see the specialist.

“Cubans need visas to go to the toilet, it’s hard work. They were concerned because we weren’t married. We went for the interview and then later to a nightclub where some musician friends of ours were playing. I loved to dance so much but moving my legs in time was like wading through honey. So Omar used to lift me up and stand me on his feet, and dance with me holding on to him like that.”

Some of the embassy staff happened to be in the nightclub that night. They recognised the tall man moving gracefully around the dancefloor and the woman standing on his feet. “They saw that I clearly had some problems, that he was clearly helping me, and we were clearly together. So one of them came up to me and said, 'I shouldn’t tell you this, but if you come by tomorrow, we’ll make sure you get a visa.’”

A couple of years later, they were married. The Cuban Boys went on to collaborate with the singer Kirsty McColl, and Omar’s own reputation has grown beyond that too, in recent years. He has played with Jools Holland and Courtney Pine, who produced a debut solo album for him last year. “I am a musician, that is who I am,” he says, although as Debbie’s condition has worsened he has had to take less work. “I would say our relationship has become even tighter. She has a strong personality, I respect that. She has achieved so much.”

He doesn’t want her to go to Dignitas. But she knows he will be there if needs be. “We have worked out that it will cost about £3,000. I keep a credit card with a clear balance, so that I can pay for it when the time comes.”

How will she know when that is? “I honestly don’t know. For the last few months, though, I have been saying to Omar, 'It’s too much, I just can’t bear this any more.’ I cry quite often, but Omar says, 'I know it’s awful, but you can’t leave me.’ Typical man, it’s all about him. His 50th birthday is at the end of this month and he’s playing at Ronnie Scott’s under his own name. If you can find a reason to go on every day, that’s enough. It has to be.”

The Commission may not achieve as much as she hopes, but Purdy will go on arguing her case while she is physically able. “If Omar lost his fingers then that would probably be the end of his life. If I lost my ability to communicate then I think that would be the end for me. Not to be able to tell politicians that they are idiots, for not seeing what needs to be done. Losing my voice? That would be unbearable.”

Her husband laughs, and nods his head. “She never stops talking. But what can you do? I love the woman.” Then he leans over the wheelchair, and kisses her.